t.com/-LNsJzPE6ELw/UaFCrsHZ6bI/AAAAAAAABbk/aSj8rnDD3Kc/s320/rylieandcat.mp4" />
Saturday, May 25, 2013
Monday, March 5, 2012
Wednesday, November 9, 2011
My TV appearance in NYC WITH THE WONDERFUL Kim Adams from Gifts From The Heart For Downs
http://abclocal.go.com/wabc/video?id=8397648
Thursday, September 15, 2011
Monday, June 20, 2011
Billy Gardell
Vinnie and I went to the Keswick the other night to see Billy Gardell from "Mike and Molly" He was absolutely hilarious! We had the best time and Obviously we got to meet him after the show. He is such a nice guy!
Wednesday, June 1, 2011
Monday, May 23, 2011
Gifts from the Heart for Downs...You can help!
I don't post much on this blog anymore, but I know I still have readers, so I'm here to ask you for a favor.
Actually the last time I posted I told you all about Rylie's amazing night meeting Miranda Cosgrove. Rylie, along with me, Vinnie and her sisters received a limo ride, dinner at the Cheescake Factory along with meeting Miranda and great seats to her concert. This was all because of Kimberley Adams from Gifts From the Heart For Downs! She worked hard to make Rylie's wish come true and she is constantly working hard so that other people with Down syndrome can have their wishes come true.
Back to that favor......Do you have $1.00 you can spare. That is all Kimberley is asking for. If everyone reading this gives just one dollar and ask everyone they know to give a dollar, she will be able to do even more wonderful things for people w/ Down syndrome who are requesting wishes.(and if you can give even more then a dollar that would be super:)
Please head on over to Kimberley's blog and you can donate right through her chip in button. THANKS!
Actually the last time I posted I told you all about Rylie's amazing night meeting Miranda Cosgrove. Rylie, along with me, Vinnie and her sisters received a limo ride, dinner at the Cheescake Factory along with meeting Miranda and great seats to her concert. This was all because of Kimberley Adams from Gifts From the Heart For Downs! She worked hard to make Rylie's wish come true and she is constantly working hard so that other people with Down syndrome can have their wishes come true.
Back to that favor......Do you have $1.00 you can spare. That is all Kimberley is asking for. If everyone reading this gives just one dollar and ask everyone they know to give a dollar, she will be able to do even more wonderful things for people w/ Down syndrome who are requesting wishes.(and if you can give even more then a dollar that would be super:)
Please head on over to Kimberley's blog and you can donate right through her chip in button. THANKS!
Monday, February 7, 2011
Rylie's wish comes true and so much more!
Yesterday was Rylie's big day! Thank you so much to Sterling Limousine, Cheesecake Factory and especially Kimberly Adams from Gifts From the Heart for Downs.
At 3:45 We were surprised with a LIMO waiting outside our house. The limo then drove us over to the Cheescake Factory for an awesome dinner. This was another fabulous surprise. Vince knew all about the limo and special dinner, but along with Kimberly they were keeping it a secret!
After dinner we went to the Keswick Theatre to meet Miranda Cosgrove and see her awesome concert! I think a lot of people at the theatre thought we were Miranda Cosgrove when we pulled up in our fancy limo! SO MUCH FUN!!!!!!!!
Rylie was so excited! She loves "iCarly". Meeting her was really a dream come true.
Miranda was so sweet and so pretty in person. She signed some autographs for us too.
The concert was fantastic and we had such great seats.
I will be forever grateful to Gift from the Heart for Down's for making my little girls dream come true. It was also super sweet that Karlie and Cesalie got to join Rylie for all the fun.
Thursday, January 6, 2011
Monday, December 20, 2010
Wishes do come true!
IN 5,4,3,2,1
I know, you see
Somehow the world will change for me and be so wonderful..........................
Do you know what show that's from?
iCarly on Nickelodeon!!! Rylie's favorite show! Rylie is pretty much obsessed with iCarly. She knows all of her songs and never ever misses an episode. She comes home from school each day and takes off her coat and shoes , as fast as she can so she can run to her room and turn on iCarly. Vince and I are amazed at how she watches the show and laughs at all the funny parts. It's great to see how she understands and gets it! We are also happy to see how she is watching an age appropriate show and not still watching shows like "Barney"! We love watching her dance and sing along with the show! She just loves the theme song! It never gets old for her and she belts it out as loud as she can.
When I found out a few weeks back that iCarly (Miranda Cosgrove) was on concert tour and going to be at the Keswick theatre, which is practically in walking distance to us I immediately thought how much Rylie would LOVE to go see her. I had remembered Sarah posting on her blog about a neat organization called Gifts from the Heart for Downs. They grant wishes to people with Down syndrome! Soooo I went on their website and sent an email explaining how much Rylie Loved Miranda Cosgrove and how she would love to go to her concert and possibly even meet her. Kim from Gifts from the Heart for Downs called me right away! She was so excited that I contacted her and right away she started making contacts so that Rylie's wish could come true!
Head on over Gifts From the Heart For Downs for the official announcement! We are forever grateful. Kim, I can't thank you enough for making Rylie''s wish come true.
I know, you see
Somehow the world will change for me and be so wonderful..........................
Do you know what show that's from?
iCarly on Nickelodeon!!! Rylie's favorite show! Rylie is pretty much obsessed with iCarly. She knows all of her songs and never ever misses an episode. She comes home from school each day and takes off her coat and shoes , as fast as she can so she can run to her room and turn on iCarly. Vince and I are amazed at how she watches the show and laughs at all the funny parts. It's great to see how she understands and gets it! We are also happy to see how she is watching an age appropriate show and not still watching shows like "Barney"! We love watching her dance and sing along with the show! She just loves the theme song! It never gets old for her and she belts it out as loud as she can.
When I found out a few weeks back that iCarly (Miranda Cosgrove) was on concert tour and going to be at the Keswick theatre, which is practically in walking distance to us I immediately thought how much Rylie would LOVE to go see her. I had remembered Sarah posting on her blog about a neat organization called Gifts from the Heart for Downs. They grant wishes to people with Down syndrome! Soooo I went on their website and sent an email explaining how much Rylie Loved Miranda Cosgrove and how she would love to go to her concert and possibly even meet her. Kim from Gifts from the Heart for Downs called me right away! She was so excited that I contacted her and right away she started making contacts so that Rylie's wish could come true!
Head on over Gifts From the Heart For Downs for the official announcement! We are forever grateful. Kim, I can't thank you enough for making Rylie''s wish come true.
Thursday, December 9, 2010
Tuesday, October 19, 2010
Girl Scouts and Daisies
Rylie joined Daisies. Today was her very first meeting. The meetings are after school right across from her classroom. I met her there and she was already sitting in the circle with her friends eating a snack. Two little girls from her class are in Daisies with her. These little girls looooove Rylie and make such a fuss over her. They love to help her and everyone wants to sit next to her. I was just there observing. The troop leader thought Rylie would be fine next time without me having to be there. So it's all good!
Karlie also had her first Girl Scout meeting today. She loves it and is so excited about all the activities they have lined up this year.
I'm just not thrilled about all the cookies we're going to have to sell. I'm not big into fundraisers. I guess I have to get into it though, because there seems to be a lot of them in Girl Scouts and Daisies.
I'm very impressed with the whole Girl Scout organization so far!
Friday, September 10, 2010
Happy Birthday Karlie
12 Years ago today I became a Mom! I'm so thankful for my beautiful daughter, the sweetest girl ever born. Love You Karlie! Happy Birthday!
Tuesday, August 31, 2010
Bethenny Frankel
One day this summer I stood in a line of 1600 people to meet Bethenny Frankel. I was about number 50 in line so it wasn't bad. I only waited about 2 hours. My guilty pleasure is watching the Real Housewives! Ha Ha!
Wednesday, June 2, 2010
The Life of A Christian
This was one of the songs played at my Dad's funeral service. It sums up the life of a Christian. Beautiful.
Thursday, May 27, 2010
Dad
My precious Dad passed away on Monday. There are no words to describe the pain my family and I feel and there are not enough words to describe the love we had for him.
My dad had such a big presence everywhere he went. He loved people. He would talk to anyone no matter where he went. He could instantly become a friend with a complete stranger. My two brothers and I were so close to him. We know how much he loved us for he always showed it. My mom and him were a beautiful couple. They had so many wonderful years together. They had so much in common. They loved the same foods, the shore, antiques, flowers etc. My parents showed me what true love is and how to endure life's difficulties together. It is because of my dad's faith that I know the Lord today. And I know the Lord will help us through this difficult time. My dad is now in the presence of Jesus, home in heaven and we know he is at peace.
Please keep us in your prayers, my mom especially.
Sunday, May 16, 2010
Well, Wadda Ya Know!
Rylie had her orbital ultrasound on Thursday and now I'm more confused then ever. The ultrasound revealed that there is no fluid causing the swelling on her optic nerves. This is called Drusen or false papilldema. True Papilldema is what we've been dealing with all this time. In other words her optic nerves just have a swollen appearance because she was just born this way. It explains why the medicine has never worked to decrease the swelling. She was put through hell to be diagnosed with Pseudotumor and all along it was Drusen.
But it's still a little tricky and confusing. Why wasn't this ever detected by the ophthalmologist all these years? Well because Drusen becomes more visible to an ophthamologist as a child gets older. Maybe the medicine worked and that is why the ultrasound revealed no fluid. Doctor said that's possible, but not likely, because the optic nerves still appear swollen. Why when she had a spinal tap did it reveal a high opening pressure? Well that high number may just be Rylie's normal(because of Down syndrome). Not really convinced about that one. Drusen can still cause vision problems, but it's rare. Unlike Psuedotumor which is very vision threatening.
Rylie was taken off the medicine and will go back to the doctor in 3 months. I'm just going to pray we go back to normal now and nothing else develops. Her vision has been fine throughout this whole ordeal.
Listen Down syndrome Moms, If your ophthamologist ever looks into your kids eyes and sees swelling of the optic nerves, make sure the very first test ordered is an orbital ultrasound! Because the ophthalmologist said Drusen is very comman with kids who have Down syndrome.
I'm still confused about everything! The good news is I think I finally learned how to spell ophthalmologist. Ha!
ALSO, PLEASE CONTINUE TO PRAY FOR MY DAD. HE NEEDS MAJOR PRAYER. HE'S WAXING AND WANING. HE WILL PROBABLY NEED A FEEDING TUBE. WE NEED A MIRACLE. GOD CAN DO MIRACLES AND HE HEARS OUR PRAYERS!
But it's still a little tricky and confusing. Why wasn't this ever detected by the ophthalmologist all these years? Well because Drusen becomes more visible to an ophthamologist as a child gets older. Maybe the medicine worked and that is why the ultrasound revealed no fluid. Doctor said that's possible, but not likely, because the optic nerves still appear swollen. Why when she had a spinal tap did it reveal a high opening pressure? Well that high number may just be Rylie's normal(because of Down syndrome). Not really convinced about that one. Drusen can still cause vision problems, but it's rare. Unlike Psuedotumor which is very vision threatening.
Rylie was taken off the medicine and will go back to the doctor in 3 months. I'm just going to pray we go back to normal now and nothing else develops. Her vision has been fine throughout this whole ordeal.
Listen Down syndrome Moms, If your ophthamologist ever looks into your kids eyes and sees swelling of the optic nerves, make sure the very first test ordered is an orbital ultrasound! Because the ophthalmologist said Drusen is very comman with kids who have Down syndrome.
I'm still confused about everything! The good news is I think I finally learned how to spell ophthalmologist. Ha!
ALSO, PLEASE CONTINUE TO PRAY FOR MY DAD. HE NEEDS MAJOR PRAYER. HE'S WAXING AND WANING. HE WILL PROBABLY NEED A FEEDING TUBE. WE NEED A MIRACLE. GOD CAN DO MIRACLES AND HE HEARS OUR PRAYERS!
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